Ever feel like this guy? I have and quite often lately. After developing The Poopinator I was sure Matt’s problems were over…and for a while they were. Slowly it stopped working. Before I knew it, Matt was back on Miralax and then some. Each additional medication and technique would work for a while then stop working. At one point I told his GI doctor in exasperation, “I feel like I am doing CPR on his colon all day long!” The terms appendicostomy and colostomy began to circulate and I became worried. How could this be? He’s super hydrated and has the cleanest most fiber filled diet of anyone I know. What am I doing wrong? Answer: Absolutely nothing. Even the best blenderized diet can’t fix a mechanical problem.

Eventually he ended up back in the hospital for yet another clean out. I needed answers to questions that sometimes even doctors can’t answer. My thoughts became filled with “What ifs?”. Further tests were done that showed he did not have a specific area that had stopped working but that he was slow over all. So we left the hospital cleaned out and back to square 1. If the current regimen fails then we will have to carefully consider what is best for Matt. Even though the test didn’t show something that was an easy fix, I still feel better. Knowing is way better than not knowing. Now we can move forward to whatever the future holds for him. And always, I pray and hope. God had a plan for Matt’s life when He placed him in our family (Jeremiah 29:11). My job is to make that life the filled with as much quality as I can.

So, since quitting is not an option, I will blend on while listening to my new anthem “The Comeback” by Danny Gokey. Feeling defeated today? Click, listen and be revived.

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One of the most rewarding parts of being a tubie parent is being able to help others along on the journey. Raiden’s mom and I connected through a group online and now I get to watch him thrive on…You guessed it. Real food. Just look at that smile! I don’t know about you but I think he’s saying, “Thanks, Mom!”

Getting started can be scary and overwhelming. Just remind yourself that, barring any dietary restrictions, tubies are real people who need real food. Think to yourself, if my son, daughter or family member could take in 100% of what their body needs to thrive orally, what would they eat? If the person was able to eat before the tube was placed, what did they like to eat? That is always a good place to start. If your tubie is a baby just starting out, introduce 1 food at a time just as you would any baby, paying special attention to possible allergic reactions. There is also a hidden benefit to the tube. Tubies often get a more balanced diet because you don’t have to battle their taste buds.

Now, the title of this post is Raiden’s Breakfast Blend so let’s get to it.

Ingredients:

1/2 cup of old fashion or quick oats

1 cup of Fairlife whole milk

1 cooked scrambled egg

1 apple

Directions:

Combine oats and milk and cook according to the directions on the package. Cook the scrambled egg and set aside. Cut apple into quarters and remove the seeds. DO NOT PEEL.

Place apple oatmeal and egg into the Vitamix container (in that order) and secure lid.

Select Variable1.

Turn machine on and quickly increase speed to Variable 10, the to High.

Blend for 1 minute or until completely smooth.

Enfit Syringe with Adapter

This blend is about 300 calories. If the blend is too thick, water can be added to reach the desired consistency. Thinner blends can have lots of bubbles so it’s best to let it sit a while before giving it as a bolus feeding.

I got a message from a dear friend today. I say friend but she’s more of a sister to me. So many times I have called on her for prayer and support. So many times she has been there for me. Being an amazing NICU nurse is a bonus. I can only imagine how the parents of the sickest of babies feel when their precious angels are in her care. She has the uncanny ability to know when I am hurting even when no one else does. Her looks and hugs speak volumes while her carefully chosen words are condensed libraries. In my experience, she is a rare gem… A medical professional who gets it. In the 25 years that I worked in the medical field I got to see first hand those who stand on both sides of that fence.

But now, as a parent of a medically complicated child with special needs, I see it from the other side of the desk. I understand on a deeper level the frustration expressed by the patients I dealt with. Much of my time now is spent fighting a system that is caught up in codes and protocol to the demise of common sense…Fighting for what is best for my child. Thankfully, Matt has a great group of doctors who listen and are open to my input about his care and are just as frustrated as I am when we hit a road block. Many of you who will read this are not so fortunate. My heart goes out to you but I am here to encourage you not to give up and not to give in.

So when her simple message read, “Sound familiar?” I knew I had to stop and read the story she had tagged me with. As I read through “Kate’s Story” I couldn’t help but feeling it could have just as well read “Matt’s Story” and I felt a kinship to the family. Then I found myself becoming angry. More like frustrated. Real food for real kids. What a concept! So why do so many of us find ourselves bucking a system that is supposed to want the best for our children? Do doctors and dieticians wake up each day and say, “Hmmm. I have 50 kids to see today. Let me see how I can mess them up.” Certainly not! The doctor’s and dieticians that have spent the last 15 years helping keep Matt alive are not ill willed. Many are simply uninformed. Others simply lack the time due to huge case loads. Still others find themselves with their hands tied thanks to a healthcare system that has become more about making money and less about caring for patients.

So where does that leave those of us who have the gall to insist that our tube-fed children and loved ones deserve and desperately need a diet that consists of real food? In the battle, for better or worse. We keep fighting, educating and spreading the word. When it comes to blenderized and pureed diets for people with and without g-tubes, we can’t quit even when we feel we’ve hit a wall. Our loved ones often can’t advocate for themselves. We must be their voice. Matt has been blessed with an amazing GI doctor. She has seen what a whole food blended diet has done for him and other patients she has referred to me for help. She too wants better nutritional options for families. But, to paraphrase a comment she made to me one day, the healthcare system today is a large ship and we are the rudder on that ship. If we simply hold our position for long enough, the ship will turn. Ever so slowly and often without notice. My hope and prayer is that our voice gets so loud that big companies that sell fake nutrition for a profit will crumble and fade away. Until then we will just keep doing what we do best…Loving. Caring. Sharing.

When you get a moment, read Kate’s Story. It will both encourage and inspire you on your journey.

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Hands up. Eyes closed. Twisting at the waist as if the top half of him was actually a washing machine agitator. Sunday morning worship is extra special when Matt is with us. Sometimes I just watch others watching him and smile. Other times I think “If they only knew what it takes on a daily basis to get him ready to go anywhere or how much pain he has experienced in the 15 years he has blessed us with his presence. Some would say, “Well, he doesn’t know any better.” I beg to differ. He may not understand it (neither do I for that matter) but he feels it. He doesn’t like it (see above picture) but he chooses not to let his circumstances steal his joy. Oh, if I could only live life the way he does-To be that strong. I think I would have checked out long ago. What joy he brings to others. I truly believe that is his calling. “Matthew” means “Gift from God” but it might as well mean “Acceptance with Joy”. But, as his mom, it is times like this that break my heart.

Another PICC line. Another g-tube stoma infection that won’t clear. Another round of IV antibiotics. A bowel that stops working no matter what I do with his diet. More unanswered questions. More decisions to make for him. Decisions that undoubtedly will involve more pain and more time away from home and school. I try not to question God but sometimes it’s hard. It’s hard when he’s in the hospital and is asking at least every 30 minutes to go home. Or, every weekday when he says, “Mom. Go school?” and I have to say “I’m sorry. Not today. You can’t go to school with a PICC line.”

I have read that, 90% of in utero diagnoses of Down Syndrome end in abortion. Some would use cases like Matthew’s as justification. Not everyone with Down Syndrome struggles with such complicated medical conditions. Many live long, happy and even independent lives. When Steve and I said no to the amniocentesis, we said “yes” to whatever God had in store for us as a family. I liken it to standing at the alter on your wedding day. You stand before God and man and make a vow “til death do us part”. Why? Because we have no idea what lies ahead. God doesn’t give us a crystal ball on our wedding day. If He did, many of us would never marry. And so it is with our children. Some come into the world healthy and stay healthy. Some come in healthy and get very sick or become disabled in some way.

So what do we do? Just as we would for any sick or injured spouse or child. We rise each day, ask God for renewed strength and deal with what’s in front of us. If Matt can take it, we can make it.

Ok it’s been a while since I been able to add a new recipe so here goes. I’m dedicating this to 2 young tubie warriors. This ones for you, kiddos!

Three years ago, right before Matt had his hip surgery, his digestive tract started giving him problems again. I was trying to avoid putting him on laxatives so I developed a green smoothie that I had hoped would help him. I originally put fruit in it and offered it to him to drink. He liked it (sort of) but he only drank 2oz. I knew that was not enough to work so I went back to the drawing board. Then it dawned on me. He has a g-tube! He doesn’t need to drink it so I can remove the fruit and add more greens! It worked. The added greens allowed me to add more fiber without fighting with him about the taste. Now when I give him a bolus feeding or hang his bag for his night feeding he smiles and says, “Ooh! Mooie! Yup. You got it. That’s where the name came from.

Bolus Feeding

Since each child and adult that are g-tube dependent have different issues, I caution you to check with your doctor before changing a feeding regimen and, if you get the ok to to try this, add small amounts at first and watch for adverse effects. I do not recommend making this smoothie with anything else but a Vitamix. The Vitamix blends the green so finely that there are little or no leave particles to get caught in the filter of the feeding bag. If the filter gets clogged that feeding stops and the alarm goes off. It’s less of a problem for bolus feeding but, if there is difficulty in breaking down solids, it could cause issues. This is the one that worked for Matt:

1 Cup of peppermint or chamomile tea

2 Tablespoons Organic apple cider vinegar

1oz fresh Aloe Vera (optional)

2oz Avocado

3 Cups packed greens (your choice)

4 tsp organic olive oil

1/4 cup fresh basil leaves

Makes 2 8oz smoothies. I have also added 1 tsp of fresh pureed ginger when Matthew’s stomach was more upset than usual. Feel free to experiment with different greens. Sometimes I will buy the large bag of Power greens or spinach from Costco along with Romaine lettuce hearts. I also keep a close eye on the local farmer’s market for greens that are on sale. Parsley is great because it helps settle the stomach.

I recently joined a group that focuses on blenderized diets. Originally my goal was to share my experience in order to help others with g-tubes live healthier lives. Little did I know I was going to need their help as well. Because Matthew is getting older and in need of more calories but not able to handle large volumes, I posed a question to the group regarding “milks” that were high in calorie. Hemp seed milk (something I hadn’t heard of) was on the list. Since this was coming from a group of people that had lot’s of experience, I began looking into it.

What I found was, it is yet another super food. So, as always, I dug deeper. Here’s what I found:

Hemp seeds have 9 grams of protein per serving. They contain all of the essential amino acids making them a complete protein.

They are a good source of iron and Zinc.

They are an excellent source of Vitamin E, Magnesium and Phosphorus.

There is also 2.8mg of Manganese which is 140% of the DV.

Hemp seeds are also over 30% fat but they are rich in omega-3 and omega-6 which is more than both chia seeds and flax seeds. These fatty acids, in balanced proportions, have been linked to a host of health benefits. “The typical American diet contains 14 to 25 times more omega-6 fatty acids than omega-3 fatty acids, which many nutritionally-oriented physicians consider to be way too high on the omega-6 side.

The Mediterranean diet, on the other hand, has a healthier balance between omega-3 and omega-6 fatty acids. Many studies have shown that people who follow this diet are less likely to develop heart disease.”

One bit of information I found was very important to know. Matthew has a condition called Chronic Thrombocytopenia. Due to a severe infection he had at the age of 4, Matthew has a lower than normal number of platelets in his blood. Since platelets are the part of the blood that allows clotting to occur, it is important for me to know that the oil in hemp seed may slow blood clotting. this is why it is so important for anyone being followed by a physician for any medical condition should research any and all super foods that hit the market and, check with and/or inform your doctor if you have or are interested in adding them to your diet.

Sometimes people have g-tubes and don’t have a lot of other medical conditions so just trying out this healthy high calorie food. Still others, like Matthew, are so complicated medically that research has to be done before even considering it. Healthy or not, medically complicated or not, my treat all super foods the same. See what is being said and check it against other websites. Health food websites tend to only give the health benefits and not the side effects or contraindications. Medical websites will sometimes do just the opposite. I choose to look at both sides and decide whether or not it’s something that will benefit Matthew or make conditions worse. If I am unsure, I check with his doctors. I especially make sure to alert his GI doctor of any dietary changes I have made. I also don’t give him anything I haven’t tried myself.

In closing, I follow the “less is more” rule. In other words, just because a super food has some really enticing health benefits, ingesting lots of it can cause problems. Look for sites that will give you therapeutic doses and stick to them. Our goal is to stay out of the doctor’s office, not end up in one.

Hemp milk is by far the easiest dairy milk substitute. There is no cooking and, with the Vitamix, there is no need to run it through a filtration bag. It is very calorie dense with lots of protein. It tastes great as is but I’ve added a couple of ingredients for folks who like their milk substitutes a little sweeter.

Ingredients

4oz hemp hearts

2 cups of water

4 pitted dates (about 1-1.5oz)

1 1/2 cups of water

2 teaspoons of vanilla

Directions

Place hemp hearts, dates and 2 cups of water into the Vitamix into the container and secure lid.

Select Variable 1.

Turn machine on and quickly increase speed to Variable 10, then to High.

Blend for 1 minute.

Turn machine off and remove lid.

Add the remaining 1 1/2 cups of water and the vanilla and secure lid.

Select Variable 1.

Turn machine on and blend for 10 seconds.

Food Tips:

It is a good idea to slice the dried pitted dates lengthwise before putting them in the Vitamix. This will ensure that no part of the pit was left inside during processing at the plant. I have yet to find any literature that says they are dangerous but the pieces can clog g-tubes. Even if a piece gets through it could cause problems in the GI tract of someone who already has difficulty processing solid food.

If you have time, soak the dates and hemp seed for 30 minutes before blending. This reduces the amount of sediment and completely removes the need for straining or filtering.

Store hemp seed in a mason jar. It is easier to pour the seed into the Vitamix container than to scoop it out of a container with a spoon. Also, store the seeds in the refrigerator. Hemp seed is high in fat so they can go rancid quickly especially if you live in a hot/humid climate region.

One cup of fresh hemp seed milk has about 194 calories. It has 10 grams of protein and 14 grams of fat so, unless you have a high caloric need, I suggest sticking to the 1/2 cup serving size. Hemp milk will stay fresh in the refrigerator for 3-4 days. Drink it straight or add it to smoothies. It is also a great base for blenderized meals.

As with all “Super Foods” take the time to research and steer clear of the idea that “if less is good, more is better.” This is very important if you are dealing with specialized or restricted diets, on medications or have various health conditions.

Time Tip: Freeze any portion of the milk that will not be used in 3-4 days in ice cube trays. Store the cubes in labeled and dated freezer bags for up to 6 months. Since each cube is about an ounce, you can quickly grab what you need without wasting any.

Money tip: Shop around before buying hemp hearts. They can run as high as 12 dollars a pound in some stores and on line. Winco has the lowest price at $7.02 a pound. They can be found in the bulk food section for much less than the prepackaged bags. It is good to alternate seed/nut milks. If you are on a tight budget, alternate the types of nut/seed/bean milks you make to save money. This is also important especially for individuals on blenderized diets to insure balanced nutrition.

Ahh, papaya! I’ve come across two groups of people when it comes to this amazing fruit. Those that love it and those that are, well…let’s just say, not so fond of it. Whether you like it or not, it’s health benefits are impressive, to say the least, so finding a way of incorporating it into your diet is definitely a good idea. You will often find papaya in tropical frozen fruit blends. Blended in a smoothie is a tricky way of sneaking it in if you ave a struggle with the after taste. But that’s only 1 way. There are lot’s of recipes to suit anyone’s tastes.
Aside from being and excellent natural laxative, papaya has some some pretty impressive nutritional facts . One cup of raw papaya contains:

55 calories

only 8 grams of sugar

3 grams of dietary fiber

144% RDI of vitamin C

31% RDI of vitamin A

13% RDI of Folate

10% (360mg) RDI of potassium

Papaya can also: Promote digestive health, work as an anti-inflammatory, boost the immune system and much much more.

Food Tip: When pureeing papaya, remove the skin. It adds no nutritional benefit, can be bitter to taste and can contain latex can cause allergic reactions. Also, for some reason, papaya goes from being a smooth, slippery, and easy to use in a bolus or pump feeding to this:

Pureed papaya with skin

Yes I did that. No, it does not bolus well (threatens to clog) and will not blend into The Poopinator . Chalk one up for experience. So, in the end, if you have not tried papaya…Go for it!

The Poopinator was lovingly named for it’s ability to move “mountains” (insert laughter)! I had reached the end of my rope, tied a knot and was hanging on for dear life when the knot unraveled. Matthew’s KUB showed that he was backed up again and the GI wanted me to do another “clean out”. Matthew does not suffer from constipation in the typical sense (hard stools). He suffers from slow transit constipation and lack of sensation so he can’t feel when he has to go and I wanted him off Miralax. We had done it before (more times than I care to remember) but this time was particularly bad. Needless to say I (and I’m sure Matthew) had had enough so I reached out to my Facebook group, “Blenderized RN” for help. I got lots of suggestions for foods that work as laxatives. I tried several individually but they didn’t work. So I put on my mad scientists lab coat and glasses and went to work. And so The Poopinator was born! No more Miralax!

Ingredients

Directions

Using a 60cc syringe, draw up mixture making sure to expel any air bubbles.

Give bolus at a rate that is comfortable for your child. For example, Matthew does well if I give 20mls at a time and wait 5 minutes in between.

Finish with a water flush. Use whatever volume your child can handle. I use 15ccs because Matt can handle it.

If 1 once of each item is too much volume, you can cut them in half. You can also start with only 1 item and see how it works before adding another.For convenience I blend the ingredients separately, freeze them in ice cube trays and store them in labeled and dated freezer bags. That way you use exactly as much of each ingredient without wasting any. Because he gets his bolus in the afternoon, I take out the cubes I want in the morning, put them in a small mason jar and let them defrost in the refrigerator. Be sure to warm the jar slightly before giving the bolus so you don’t end up with an upset stomach. If this recipe doesn’t do the trick, try The Poopinator Plus.

Since everyone’s system is different, some things may work too well (causing diarrhea) and some not at all. It can be frustrating but don’t give up. Try foods independently or, like I did, create your own cocktail. Like any good recipe, just remember to write it down so the items and amounts stay consistent.

*Be careful not to use too much fresh spinach. The iron in it can be counterproductive if not constipating.

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So why is the Vitamix the only blender I will endorse? It is the Vitamix engineering. Vitamix has an extensive history and a warranty that backs their claims. And why not? This company has been going strong since 1921! Mine has been running strong since 2011 and I use it daily. There isn’t another appliance in my house that I can say that about. It is an investment into the health of my family.